Part 3 of 3: While a number of genes that cause ALS have been identified, researchers still don’t fully understand how these mutations lead to the disease. The good news: through ongoing effort and funding support, researchers are advancing knowledge of ALS that may one day lead to a cure.
RESEARCHING ALS
For the approximately 2,500 to 3,000 people living with ALS in Canada today – and for the family and friends who care for them – there is no comfort in the fact that they will not die of a ‘common’ disease such as cancer or heart disease.
From the date of diagnosis, 80 per cent of people with ALS will die within two to five years, most of respiratory failure. Loved ones may be emotionally, physically and financially bankrupted by the demands of providing care.
“It could change any time,” says Ben Wendland, chair of the ALS Society of Canada. “But at this time, there is no cure or effective treatment yet to stop ALS, or even to significantly slow the progression.”
Montreal researcher Guy Rouleau, leader of a team that identified a gene responsible for one type of ALS in 1993, says, “The state of molecular research is that there are now a number of genes identified that cause ALS. We do not fully understand how these mutations lead to the disease, but these entry points into understanding ALS have given us a lot of clues that are starting to coalesce into a global picture.”
In the last 15 years, he says, there has been more progress made in ALS research than in the previous 100 years. “We now have models that are proving to be extremely useful, to evaluate possible treatments, mechanisms of disease onset and progression, and where we could intervene to lter the course of disease. Many avenues have opened up.”
For people with ALS today, says Denise Figlewicz, director of research at ALS Canada, there may come a moment of acceptance, an acknowledgement that there will not likely be any treatment available for them personally. But even for these patients and their families, research represents hope – optimism that there will be a better fate for ALS patients in the future. “Patients are anxious to be personally involved in research if possible. This is critical if research is to continue, and represents an important contribution from their perspective.”
While the search for a cure continues, research is also underway to prolong and enhance quality of life. “The cutting-edge technology being developed today will mean useful prosthetic devices for patients in the future – perhaps substituting for loss of hand function, perhaps providing support to the respiratory system.”
“The ALS Society of Canada celebrated two important milestones in 2007,” says Mr. Wendland. “It marked the 30th anniversary of our incorporation, and we surpassed the million dollar mark in funding for research for the second year (2006 was the first). Our projection for 2008 is $1.5 million.
“In 1999, the Neuromuscular Research Partnership – an agreement between the ALS Society of Canada, Muscular Dystrophy Canada, Canadian Institutes of Health Research’s Institute of Genetics, the Institute of Neurosciences, Mental Health and Addiction, and the Institute of Musculoskeletal Health and Arthritis – was created to collectively fund health research by providing operating grants to researchers investigating neuromuscular diseases.
To date, more than $24.9 million has been invested in research. We’re considerably more effective together than we could manage on our own,” says Mr. Wendland.
Organizations such as the ALS Society of Canada are crucial to the progression of research, says Dr. Rouleau, both in funding and in facilitating the exchange and collaboration of researchers across the country. “It’s important to bring everybody together. We might have one piece of the puzzle that doesn’t fit anywhere – but someone else may have the piece that fits with what you’re doing.”
During the months of May, June and September, thousands of Canadians across the country will walk to raise money for ALS research and care. Please join them – visit walkforals.ca for more information.
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